New Maybe ITP, or something else? - ITP Support Assoc...

ITP Support Association

4,086 members2,073 posts

New Maybe ITP, or something else?

tropical1 profile image
9 Replies

3/28/13 I went alone to a restaurant and became so weak and ill I couldn't drive home. Had to sit on the floor in the bathroom and wait for someone to come get me. That night, I noticed a "rash" and soon learned it was patechei and bruising. The urgent care said my platelets were 6,000 and sent me to the er where I was promptly seen. They had dropped to 3,000 that quickly. By the time I got a platelet transfusion they went to 1,000. They put me on prednisone and was at 536,000 last week.

I had been on Bactrim, so the hematologist said he doesn't know if ITP or drug induced ITP. But, since on the prednisone I have felt "normal" after 6 months of fatigue, joint and muscle pain. Also experiencing hairloss, low vitamin D and low testosterone (I'm a woman), weight loss and headaches. ALL of the symptoms have gone away since I am got out of the hospital. I didn't realize how bad I felt, until I felt good again.

These all seem to point to Lupus. I have to come off the prednisone tomorrow and am hoping I don't fall back into the same symptoms. My hematologist has suggested not recommended a rheumatologist, but my gyn did. Still waiting to get an appointment.

Do any of these symptoms sound familiar to anyone? Any advice?

Written by
tropical1 profile image
tropical1
To view profiles and participate in discussions please or .
Read more about...
9 Replies

Fatigue is a common effect of ITP. I too have said that I didn't realise how bad I felt until it stopped. I have never heard of lupus symptoms being totally eradicated by a short course of steroids so don't think that conclusion is necessarily sound. Easy enough for the haematologist to order blood tests to see if lupus is a possibility if he has a mind to. If not you could get them from elsewhere. You should also probably get tested for APS which often goes along with ITP, and add in thyroid tests too as both those cause aches and pains.

Are you stopping the steroids without tapering? Or were you only on a low dose? If on a high dose you will probably suffer more aches and pains on withdrawal.

tropical1 profile image
tropical1 in reply to

I was on 60mg, then he took me to 40mg and 20mg. Today is my first days stopping completely. I go back for labs next week.

I also found it interesting to read about how people feel cold. My husband and others are always commenting on how I am the opposite of everyone.

Thanks for your response!

Billteapot profile image
Billteapot

Not sure what my doctor meant, but told me my body should not hurt or ache when coming off the steroids. Yet so many people say the same as me???

Blimey-MoreBloods profile image
Blimey-MoreBloods in reply to Billteapot

Has ur Dr ever taken high dose of steroids n then come off them????

Billteapot profile image
Billteapot in reply to Blimey-MoreBloods

Haha that's funny!

rina4gr profile image
rina4gr

I have the same symptoms. After a blood test and urine test I was called to the ER because my platelets were 1,000 and at risk for brain hemmorage. Stayed in hospital 5 days, diagnosis of ITP and 60 mg dose of prednisone along with 6 platelet transfusions. Hallucination, false sense of well-being, hyper and too happy! Cold. Home now, feeling lazy but no pain or stiffness so now I wonder what was really going on. I hadn't made an association between arthritic type pain and no platelets. Any ideas?

Blimey-MoreBloods profile image
Blimey-MoreBloods in reply to rina4gr

I reckon it's the steroids- I had same reaction when on 90 mg Pred - manic, trouble sleeping, anxious, no tolerance, eating - anything- now on 60 mg daily n things av calmed down n I feel very well. But platelets are dropping weekly- 112 last wk -62 this week.....

rina4gr profile image
rina4gr

Scary. Do they think Predisone is the drug for you? Do you feel the same when the count is up or down. Are you advised to follow any diet, i.e., avoid certain food? what about weight issues, moon face? I am having my first blood test after being discharged from hospital. today

Blimey-MoreBloods profile image
Blimey-MoreBloods

Pred is the first drug of treatment - I felt absolutely fine when count was 2 for 5 days n I was kept captive in hospital ..... For 8 days until count was over 20- supposedly risk of internal bleed reduced when over 20!! I've controlled weight by trying to munch on low cal foods- but it was a battle- I had overwhelming g urge to eat cooked breakfast at Adsa!! I keep looking at my face but no moon - yet!!! Good balanced diet.... I'm not convinced about alternate therapies - PDSA.org has lots of info about all manner of things to try.... Each to their own I suppose- crazy Yanks!!! Only joking- just in case your from States!!!

Good luck for bloods tomorrow but I think the mindset to deal with ITP is that you got it but it can be managed

You may also like...

NEW with ITP

unexplained bruises on my arms I felt this was not normal. Test results was a chock where platelet...

So new to ITP, I'm still in the hospital

here in my hospital bed researching ITP. I had been getting bruising on my arms for about two...

ITP - Not Taking Medication - Feedback

hospitalized. I was given IVIG plus a platelet transfusion and then my prednisone was increased to...

Curious how many people with ITP were in a third world country just prior to getting ITP?

After being a really brittle ITP patient with platelets as low as 1,000 last August 2017, I am cured

New ITP Patient Coming to the UK :) Help Please

pretty new to ITP (2 stormy months since diagnosis with 1000 platelets). High dose prednisone,...